Objective:

To explore perceptions of adults living with spinal muscular atrophy (SMA) during their transition from pediatric to adult care and to obtain suggestions for optimization.

Background:

SMA is a neuromuscular disease characterized by progressive muscle weakness and atrophy. Due to access to FDA-approved therapies, more individuals affected by SMA are entering adulthood than ever before. The present landscape of the transition process from pediatric to adult care for adults with SMA has not yet been studied.

Design/Methods:

A survey was developed and distributed from August through October 2021 to adults living with SMA, aged 18-29 within a nonprofit-owned membership database.

Results:

139 complete responses were obtained. 52.5% of respondents indicated full transition to adult care, 22.3% partially transitioned, 13.7% were preparing to transition, and 11.5% indicated they continue seeing only pediatric providers. Only 43.9% of respondents who were preparing to transition developed a transition plan with their pediatric provider. When asked how to improve the transition process, 91.9% of respondents with adult providers desired discussions about differences between pediatric and adult care, and 90.2% of respondents wanted their pediatric providers to facilitate meetings with adult healthcare providers. 81.8% indicated that they would like to receive educational materials about health insurance retention and community support resources when they transition. To enhance care, respondents with adult providers were interested in using communications options such as MyChart (78.8%) and online scheduling tools (77.9%). 

Conclusions:

This research provided valuable insight into the experiences and challenges faced by adults with SMA transitioning from pediatric to adult care. As more patients with SMA obtain treatment and enter adulthood, healthcare provider teams are encouraged to collaborate with SMA-affected individuals and families to develop and implement transition plans which include materials that increase patient knowledge of disease status, encourage self-care management, and optimize patient experiences.